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Mature Minors Should Have the Right to Refuse Life-Sustaining Medical Treatment

Published online by Cambridge University Press:  01 January 2021

Melinda T. Derish  and
Kathleen Vanden Heuvel
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Imagine that you are a teenager and have cancer. You undergo a year of chemotherapy and after a brief return to normal life, you have a relapse. Your physician says that chemotherapy and radiation therapy could be tried, but a bone marrow transplant (BMT) is your only chance of a real cure. He tells you and your parents that you could die as a result of complications from the transplant, but without it you would only be expected to live one year. You and your family discuss the alternatives and decide to have the transplant. You ask what will happen if the BMT fails, but both your physician and your family tell you that right now you must fight to get better and not think negative thoughts. You do not ask any more questions.

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Article
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Journal of Law, Medicine & Ethics , Volume 28 , Issue 2 , Summer 2000 , pp. 109 - 124
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Copyright © American Society of Law, Medicine and Ethics 2000

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References

To date there is no research to document the frequency with which arguably mature minors might be receiving LSMT against their wishes. We therefore surveyed the medical directors of the eighteen pediatric ICUs in California that are approved by California Children's Services. Sixteen of the eighteen medical directors were interviewed. None of the medical directors had ever seen a written advance directive used by a patient less than eighteen years of age and all of them cared for many patients in the 15 to 17 year old age range. Thirteen directors could recall at least one occasion when they had been providing intensive care to an adolescent patient against that patient's own wishes. It seems reasonable to conclude that at least in California, the current medical system precludes minors of fifteen years and older, some of whom would be developmentally capable of understanding their medical condition, from executing an advance directive. It also permits these patients to be forced to receive LSMT. Many of these patients are at risk for the paralyzed but conscious type of death that we described in our prologue.Google Scholar
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If one or both parents or the patient's physician were opposed to a mature minor's choice it would be exceedingly difficult for the patient to reach the court, even under our proposed solution. If the mature minor's right to make autonomous decisions about LSMT were more clearly delineated, a minor might then have recourse to an agency, such as child protective services, to assist her in getting into court.Google Scholar
See Traugott, supra note 92, at 926. Pediatricians are already accustomed to petitioning the court when parents refuse consent to life saving medical treatment on a religious basis. See also, Hawkins, S.D. supra note 100, at 2087, note 88, for citations to a number of court-ordered transfusion cases.Google Scholar
The need for anticipatory decision making has been emphasized: “Moreover, when specific life-sustaining measures will predictably become an issue in a specific clinical context, it obviously makes sense to discuss those measures in advance (e.g. mechanical ventilation for patients with severe emphysema).” Brett, A.S., “Limitations of Listing Specific Medical Interventions in Advance Directives,” JAMA. 266 (1991): 825–828, at 828.CrossRefGoogle Scholar
The AAP asserted that the substituted judgment standard should be used “for children who are emancipated or mature when their wishes are known or may be deduced.” AAP Guidelines on Forgoing LSMT, supra note 6, at 535. See also, In re Rosebush, 491 N.W. 2d 633, at 637 (MI. 1992): “[I]n making decisions for minors or other incompetent patients, surrogate decision makers should make the best approximation of the patient's preference on the basis of available evidence. … Under the proper circumstances—where a patient was formerly competent or is a minor of mature judgment—the substituted judgment standard is an appropriate test.” Id. at 639.Google Scholar
This has been suggested by Traugott, supra note 92, at 926–927Google Scholar
Coordinating Council, supra note 76, at 112.Google Scholar
Id. at 110–11.Google Scholar
Id. at 18.Google Scholar
See Meisel, supra note 2, vol 1, at 144, for a discussion of the emerging consensus that competence is not an all or nothing condition, but is often context-specific.Google Scholar
One of the reasons the U.S. Supreme Court gave for insisting that a pregnant minor be able to go directly to the court without notifying her parents is that parents who were opposed to abortion would block their child's access to the court. See Bellotti v. Baird, 443 U.S. 622, at 647–48 (1979)Google Scholar
Although an independent advocate is the best legal representation for a minor, she will have difficulty seeking out and paying for an attorney. As medical treatment cases are civil proceedings, there may be no constitutional right to representation. See Hawkins, S.D. supra note 100, at 2104. For an example of a court that does appoint an attorney in cases involving the withdrawal of LSMT from minors, see Los Angeles County Superior Court Rule 17.4. Life Sustaining Medical Treatment. (Before ordering the withdrawal of LSMT for minors subject to juvenile court jurisdiction the court must appoint an attorney to represent the minor, if the minor does not have an attorney.) id. at 17.4(a) and 17.4(g)(1).Google Scholar
See Mark, L.B., “The Competent Child's Preferences in Critical Medical Decisions: A Proposal for its Consideration,” Western State University Law Review 11 (1983): 25–58, at 52–53.Google Scholar
See Coordinating Council, supra note 76, at 87–88, recommending that an exception to the “general rule against viewing the patient” occur when the court needs to address “the competency of the patient” and the patient is too ill to come to the courthouse.Google Scholar
Of course, the PSDA is not a panacea. “The concern has been expressed that the PSDA is “motivated less by a genuine respect for actual informed patient choice than by the feeling that physicians and hospitals now need not trouble themselves in making truly critical and sometimes agonizing decisions.” Anecdotal evidence suggests that the statute has not had the effect of encouraging physicians to initiate end of life discussions with patients.” Meisel, supra note 2, vol 2 at 54, citing Loewy, E.H., “Advance Directives and Surrogate Laws: Ethical Instruments or Moral Cop-Out?” Archives of Internal Medicine 152(1992): 1973–76, at 1973.Google Scholar
Special Report, Sources of Concern about the Patient Self-Determination Act, N. Engl. J. Med 325 (1991): 1666–71, at 1670. “The PSDA's requirements must become not a ceiling but a floor.”Google Scholar
At least two state courts have concluded that minors have a right to have their previously stated end-of-life preferences honored. In In re Chad Swan, 569 A.2d 1202,1206 (ME. 1990) the Maine court gave authority to a seventeen year old's verbally expressed, but “well-formed desires as to medical treatment.” (a previously stated desire to avoid LSMT). The court considered Chad Swan's age as only one factor in evaluating the seriousness of his stated preferences. Id. at 1205. In In re Rosebush, 491 N.W. 2d 633, (MI. 1992) the Michigan Court of Appeals concluded that “[t]he advance directive of a mature minor, stating the desire that life-sustaining treatment be refused, should be taken into consideration or enforced when deciding whether to terminate the minor's life support treatment or refuse medical treatment.” Id. at 636, note 4. Nor can hospitals subject to the PSDA's requirements assume that their advance directive and/or durable power of attorney statutes are the only acceptable means for stating one's end-of-life preferences. See, for example, Conservatorship of Drabick, 245 Cal. Rptr. 840 (1988), holding that neither California's Natural Death Act nor its Durable Power of Attorney for Health Care statute were the exclusive means by which a person could express legally cognizable preferences about LSMT.Google Scholar
42 USCS §1395cc(f)(1)(E).Google Scholar
See Batterman, supra note 122, at 673; and Lonowski, S.C., “Recognizing the Right of Terminally-Ill Mature Minors to Refuse Life-Sustaining Medical Treatment: The Need for Legislative Guidelines to Give Full Effect to Minors' Expanded Rights”, University of Louisville Journal of Family Law 34 (1996): 421–45, at 443.Google Scholar
See Belcher, supra note 89. Physician was found to have a duty to obtain consent of a mature minor patient before issuing a DNR order.Google Scholar
For a review of the landmark cases involving discontinuing LSMT, see Burnell, G.M., Final Choices (New York: Insight Books, 1993): at 215–16 and 220–222.Google Scholar